#Dying is Inevitable. #Living is Not. "#Love is Stonger Than #Death" Rest in Awesome Esther.

"Wayne Earl reveals the power of living and loving life by sharing the wisdom of his daughter, Esther Earl, who lost her battle with cancer just before her 16th birthday. Esther's courage, positive spirit and hope for the future transformed all who knew her. She showed the world what it meant to live life before death (via her well known vlogs and blogs) and that love is the engine of life. Esther Earl shared her spark of possibility with great generosity and was the inspiration for author John Green's #1 New York Times bestseller, The Fault In our Stars.

Wayne Earl recently authored the compelling life story of his daughter, Esther Grace, who succumbed to cancer shortly before her 16th birthday. Before she died, a deepening friendship with her favorite author, John Green, greatly encouraged her. The friendship also inspired Mr. Green, most notably in his writing of the world- renowned novel, The Fault in Our Stars, which he dedicated to Esther. The Earl Family founded the non-profit organization, This Star Won't Go Out, to help ease the financial burdens of families caring for children with cancer."

#Prepare for a good End of Life. #ACP #InformedChoice #EOL. Judy MacDonald Johnston

“Thinking about death is frightening, but planning ahead is practical and leaves more room for peace of mind in our final days. In a solemn, thoughtful talk, Judy MacDonald Johnston shares 5 practices for planning for a good end of life.”

Before I #die I want to... "Thinking about #Death clarifies your #Life". @candychang

“In her New Orleans neighborhood, artist and TED Fellow Candy Chang turned an abandoned house into a giant chalkboard asking a fill-in-the-blank question: ‘Before I die I want to ___.’ Her neighbors' answers — surprising, poignant, funny — became an unexpected mirror for the community. (What's your answer?)”

Things No One Told Me About #Grief

“No one purposefully neglected to tell me these things about grief. Loss, pain, sorrow, heartbreak, they are all simply topics that aren’t discussed in depth and that are experienced in both unique and universal ways. To say: this is how you will experience grief robs it of the unique, yet to say: this is how we mortals experience grief is to give the gift of not being alone. How do we talk about things for which there are no words, in any language that can capture the whole of it? The pain of tragedy burns so deeply and transformatively that we pander around in art, movies, poetry, flowers, songs, essays, trying to grasp the unfathomable. That’s what tears are for, they are the words of the utterly crushed…

No one ever told me that explicitly, either, but I think I’ve known it all along. That love both breaks and heals. Walking through loss with my daughter and sharing our grief is strengthening our relationship. Even though it won’t miraculously heal scars or close up black holes of loss, shared grief is what love looks like.”

The Unexpected #Grief Of The Unknowing

"Through all my self-doubt, and the grief I still experience, I am comforted knowing my mom knew my heart. She understood (more than I could have at the time) how typical, though ill-timed, my behavior was. Nothing changes a mother’s love."

How to tell everyone what kind of #music to play at your #funeral. #ACP

“For Andrew Smith, a six-day stay in hospital got him thinking about life and death.

Granted, he was only having a toe removed. But what would happen if he passed away? Did his family know what kind of music he would want played at his funeral, or whom he would want in attendance?

 ‘I thought, I really need to get this stuff written down. But then I decided there’s a lot of people in the same situation as me, so if I can create a website where people can do it at home, at their own pace, that would be awesome,’ says the 44-year-old from Halifax who now lives in Vancouver.

The result of his thinking was Final Wish, a secure website that stores information that people would want shared at their time of passing. That includes what should be done with social media accounts and who should look after pets. Upon death, that information can be accessed by preappointed confidants.”

#Alone on the Range, #Seniors Often Lack #Access to #Health #Care. #QOL

“In most of the United States, families help with driving, shopping and activities of daily living as their relatives age. When adult children leave their rural homes, a key component of elder care goes missing.

‘There’s a question of whether people have to go into nursing homes prematurely’ because they lack family caregivers, Dr. Glasgow said.

In their absence, neighbors and churches can play compensatory roles. Her research in rural areas has shown that older adults actually prefer to accept services from their churches rather than from government programs.

Satellite clinics and telemedicine can help bridge some of the health care gaps. For digitally adept older adults, the Internet already allows easier shopping, entertainment and social interaction.

Dr. Glasgow, among others, has called for better transportation options and for more senior housing, so that rural communities can bring services to clusters of people who need them.”

Why we need better #end-of-life #policies in #seniors’ residences. #LTC

“How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.”

How We #Grieve: the Messiness of #Mourning and Learning to Live with #Loss. @meghanor

“It’s not a question of getting over it or healing. No; it’s a question of learning to live with this transformation. For the loss is transformative, in good ways and bad, a tangle of change that cannot be threaded into the usual narrative spools. It is too central for that. It’s not an emergence from the cocoon, but a tree growing around an obstruction.”

A #Daughter Pays Homage to Her #Parents With an Intimate Look at #Love and #Loss. @nancyborowick #hpm

"One can only truly understand and appreciate life when faced with one’s own mortality. Nobody wants to talk about death, but it is one of the only things that is certain in life, so an awareness of this finitude allowed my family to take advantage of the time we had left together. “Cancer Family, Ongoing” is the story of family, looking at the experiences of two parents who were in parallel treatment for stage four cancer, side by side. The project looks at love and life in the face of death. It honors my parents’ memory by focusing on their strength and love, both individually and together, and shares the story of their final chapters, which came to a close just 364 days apart from one another."

Are #Families Ready For The #Death And #Dying #Conversation? #ACP #InformedChoice

"The Institute of Medicine (IOM) believes the time is right for a national dialogue to normalize the emotions on death and dying. They think that the social trends point toward a growing willingness to share stories about the end-of-life care and that it will help drive more family discussions. In the IOM consensus report, Dying in America, experts found that accessibility of medical and social services could improve a patient’s life at the end. But if people don’t discuss which medical care or social services they want or not, how will their wishes be known and carried out?"

The Meaning of #Life: #Palliative #Care Makes Every Moment Count. #hpm

"For someone facing a serious, chronic illness, the answers to that question take on a sharp focus. A patient with heart disease might want enough energy to walk around the neighborhood. A cancer survivor may want to feel like herself again after rounds of chemotherapy. Others might have a goal of seeing their children get married—or perhaps to get married themselves.

Helping patients get the most out of life is the aim of palliative care—which could surprise some people who associate the specialty with hospice, or care delivered in the final days and hours. Palliative care services do indeed benefit people nearing the end of their journey, but the field has become much broader over time. Many patients with a life-threatening disease now start receiving palliative care early—sometimes soon after diagnosis..."

On #Widower Watch. #hpm @otherspoon

"Marking family and personal occasions in this way has become increasingly important to all of us; these events intersect long, quiet weeks with laughter and company. And here’s the often unacknowledged benefit to keeping watch on a widower: With my grandparents dead and my friends all around my age, he diversifies my social life as much as I do his. He gives me a perspective on the city we live in that my peers simply don’t have. We spend our time together talking about our dissimilar lives and the things that matter to us, reminiscing about his many rich years, and looking up old poems in the vast library that lines the walls of his house. He is my friend and I miss him when I am away. As it turns out, nonagenarians are good company".

Surrounded by #pain, #doctors turn to poetry, writing to #cope with #loss

"The genre has blossomed as doctors have become more comfortable acknowledging their humanity and vulnerability through prose, said Dr. Paul Gross, the founder and editor in chief of the online journal Pulse, which carries the tagline 'voices from the heart of medicine.'

Doctors deal with so many difficult situations each day, Gross said. “How do you process it? And how do you remain whole as a person?” Writing helps them work through those issues by forcing reflection..."

The "On Coming Alive" Project. #Grief. @lexibehrndt #oncomingalive

"We believe that we are meant to come alive. This doesn’t mean we’ll be without pain. This means that we’ll face the pain, looking it in the eye, feeling it, acknowledging it, never faking it, but embracing life for what it is, a coexistence of the deepest sorrows and the deepest joys. We want to be alive to feel both, because we know that if we hide from the pain, we often also hide from true, deep joy, from freedom, from love and life.

We believe that we come alive as we mend, but we also come alive when we reach up and reach out.

We want to dig down deep and muster the grit within us, reach out our hands, and pull one another to the light, because we don’t believe that we’re meant to always live in the darkness."

It’s worth it: #Love in the face of #Death. @lexibehrndt

"It’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.

And it is worth every single second— every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, 'I love you, too.' They are worth it all.

Take it from me.

Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more."

How to Tell Someone You’re #Terminally #Ill. #hpm

"Though everyone eventually dies, few know how to talk about the end of life. ‘‘People don’t know what to say,’’ Wanda says. ‘‘They’re afraid.’’ Be prepared for strange and stilted reactions. Some want to believe in a fix and will give you unsolicited health tips. (‘‘Don’t eat sugar.’’ ‘‘Avoid gluten.’’) You can ignore their suggestions but acknowledge the heart underlying them. People may offer to pray for you. ‘‘Prayers are good, but maybe what I need is someone to listen,’’ Wanda says. For that type of engaged listening, you may need to seek out a professional, like a trained social worker or a psychiatrist. Sometimes people who know about your condition — those you tell will tell others — will pretend your situation does not exist. Or weirder still, they will temporarily forget". 

#Dying, With Nothing to Say. #hpm

"Months later, I began writing a book about writers’ final days. Talking to my subjects’ families and friends, I realized that while nearly everyone has a fantasy of a “last conversation” with someone they love, very few people actually have it. It is the fantasy of resolving all conflicts, of emotional catharsis, that rarely ever comes to pass, because the habits of reticence or resentment that were there the whole time are still there, because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to…

Part of the problem is that some silences are too wide to narrate. Words, even if the right ones miraculously presented themselves, would not be enough. The confession and forgiveness we want to fill the room do not spring up more naturally in extremis, under duress. It may be the last chance for the dying person to clarify, but clarity doesn’t necessarily come. In this way, death is a lot like life".

Drawing portraits of #dying people in #hospice taught this artist about #living. #hpm @claudiabicen

"Sitting in the museum’s atrium the day before the show opened, Biçen, 29, said she embarked on the project believing the dying might have lessons to teach her.

'Birth and death – these two moments of life are really sacred, and everything in between is kind of the madness of life,' she said. 'I thought that lying there on your deathbed you’re going to be confronting your life. What did it feel like to be dying? I think most people haven’t had a conversation with someone who is dying. It’s just pushed out of social consciousness and I think that’s problematic'."

How ‘Before I #Die’ Walls Boost #Palliative #Care. #hpm @candychang

" 'In order to die well, we need to learn how to talk about it,' Chang said, speaking to members of AAHPMN and HPNA.

Palliative care offers those with serious illnesses—both short and long term—more options with a focus on improving the quality of life. Public support for palliative care and end-of-life planning with medical professionals has swelled in recent years, but talking about death and care for those with serious illness is still complicated and difficult.

What Chang accomplished in her project was open up the conversations that are difficult to have—both with doctors and family members—whether under the circumstances of a serious illness or not. The chalkboards provided an anonymous outlet to share ideas, memories, anxieties and aspirations that are emotional and complicated."